Sunday, January 1, 2017

New Year's Eve in Hershey and That's a Wrap for 2016!

After a fun filled Christmas but almost a full week of work for Johnny we decided to head to Hershey to celebrate New Year's Eve.  We headed out late morning and decided to stop at the Bass Pro Shop on the way there. We don't ever really NEED anything, but it's always fun to look at the taxidermy animals and huge fish tank.  After dreaming about boats and looking around for a while we headed the rest of the way to the hotel.  Unfortunately our room wasn't ready so we killed some time at the outlets and then went to check-in.  We haven't stayed at the Hotel Hershey since the kids were born, but it did not disappoint! It was built in 1933 and has been expanded and renovated several times over the years.  We had about an hour to relax before we headed to Giant Center for a Hershey Bears Hockey game.  It's tradition for us to go up for a game, but we usually go earlier in December.  Given Johnny's school schedule we waited since he didn't have classes on New Year's Eve.  We had a great time at the game despite a loss and even ran into some friends who live right up the street from us!

After the game we decided to head to the Downtown Hershey block party.  They had a band playing and they raise a huge Hershey kiss at midnight followed by fireworks.  They had many different food vendors and the Hershey Kiss Car.  And of course, the characters from Hershey Park were there including the Hershey bar and the Kitkat.  We also found a beautiful Methodist church that was serving hot cocoa and cookies in their basement.  Although it wasn't terribly cold, the kids were a little chilly, and there wasn't quite enough to do to entertain the kids for the three hours we had until midnight so we decided to head back to the hotel for the dance party.

We got there about 9:30pm and the kids were already starting to seem tired.  But the minute we walked into the room they both perked up and had such a fun time.  Cole was a dancing machine!  HE had so much fun with the loud music, light up dance floor and dancing with the Hershey bar and Kitkat.  Reagan danced too, but she also had fun with all the light up wands, balloons and necklaces.  They both lasted much longer than expected, but we decided to head up to our room about 11pm.

Since we made it so close to midnight we decided to order pizza and popcorn to the room and watch the ball drop.  The kids had a sword fight with their light up swords from downtown.  They've never stayed up that late before and thought it was really fun.  Cole fell asleep just before the ball drop but Reagan stayed awake!  We then watched some of the downtown fireworks from our window before falling asleep.

Surprisingly the kids were wide awake by 8am and begging to go to the pool.  So we headed down for a quick swim before breakfast.  The hotel had robes in the rooms and the pool area was very warm so it was a nice morning.  Then we all took showers, packed up and headed to The Circular for breakfast.  I had been thinking about this breakfast for days!  Unfortunately because it was New Years Day (and more than usual attendance) they didn't have their usual omelet and Belgian waffle stations.  Although I was disappointed, the buffet did not disappoint!  It's such a beautiful room with stained glass windows and beautiful views out to the terrace.

It was an amazing and fun filled 24 hours that unfortunately had to come to an end. But we had a great time and will definitely be back!  It was a great way to wrap up 2016.  It was a year with no hospitalizations so we have a lot to celebrate!  I also made a concerted effort to reduce the amount of time we spent in doctor's offices.  So we stopped seeing a few of the specialists and spaced out some of the others.  Although we had to add a few new ones, overall it felt like we had less appointments.  Last year we had 32 appointments and 101 therapy appointments. This year we had 25 doctor appointments, one surgery and about 70 therapy appointments (decreased from last year because we didn't have constraint camp and Reagan didn't get off the wait list for therapy until halfway through the year).  Overall I call this year a success!!  Bring on 2017!

Thursday, December 29, 2016

Christmas 2016


The kids were very excited about Christmas this year.  I always find it interesting that there are so many elements of parenting that are not as I expected and this is one of them.  I expected kids to "get" Santa much earlier.  Don't get me wrong, they have been excited about Christmas for years, but I don't think it was until last year that they really started to think about Santa ahead of Christmas - so we'll call that age 5. Then this year I've already heard "that Santa is not real" and that's age 7.  One thing that is different for my kids than for me growing up is that they see Santa in SO many places, but not always top quality Santa's which means they don't have real beards and the kids clue in that they must not be THE Santa.  Which, of course, can be explained because Santa has so many helpers, but still.  The questions begin.  Before kids I always thought the magic lasted for so long. I'm hoping we can hold on to it for another few years.  Hearing the squeals when they saw presents under the tree and realized Santa had come was so fun to watch.


Reagan only had a few items on her wish list.  The first was Zoomer Kitty, which was actually on her list from last year but Santa didn't bring it.  She was excited that you could get the kitty in pink this year (only black last year).  It is a high tech toy that meows, purrs, follows you and plays with a ball.  She also wanted the American Girl doll, Leah.  She's a beautiful doll and a good addition to the family.  She also really wanted Littlest Pet Snuggles Tiara.  This was a gift she has wanted since her birthday but again, something she waited for patiently. It's a dog that opens and closes its eyes if you rub his nose.  It snuggles with you when you hold it and it makes noises.  Her most desired toy was CHiP, which is a robotic dog that is the next generation of Zoomer Kitty.  Unfortunately she did not receive this toy, but perhaps one day :)


There was also a very popular toy (and hard to find) called a Hatchimal that she was hoping Santa would bring her.  Luckily Santa found one for her and one for her brother.  It is an egg that only hatches when you give it love and attention.  The animal inside rotates and pecks the egg until it cracks open.  There are five species of these Hatchimals and you don't know exactly what color you will get until it hatches.  Reagan and Cole both got the Daggle which is somewhat like a dragon.  Once born, it plays the happy birthday song but is only an infant.  The more you play with it, the faster it grows up (through toddler to adulthood).  By the end second day it had learned to repeat words.  Reagan taught hers to say "I love you."  It has activity appropriate responses.  For example, if you rub it's head it purrs. If you throw it in the air it says, "weee."  So far they are having a lot of fun with it.

Cole had a much simpler list that only included "a car that I can fit in to drive really fast."  Unfortunately Santa did not bring him the toy he wanted.  I reminded him that you have to be 16 to drive a car like that, but he still couldn't think of anything else he wanted for Christmas.  He is having fun with his Hatchimal, though.  He also loves clothes with the Nike swoosh so he got two new sweatshirts and a pair of pants.  He also got a superman costume, scrabble game, a robot building kit (like Legos) and a new iPad. His last one was about 5 years old and after the screen shattered it never worked right again even though the screen was replaced). The kids big gift from mom and dad was an air hockey table. They were very surprised and have had a lot of fun with it! Luckily it keeps score so there will be no fighting about who is winning :)

Following tradition, we went to Grandma and Grandpa's for brunch.  Reagan received a Nutcracker music box and Cole received a lap harp which he didn't want to put down! He is excited about using it during his music class.  After visiting for a couple hours we headed home and hosted Johnny's family at our house.  It was so fun to be able to use all the beautiful Christmas dishes we received for our wedding.  Nana and Pop came in addition to his sister Vicki's family.  We had a fun time catching up.  Reagan received a Lego set and Cole got a remote control race car. They also got gift cards towards new shoes. Unfortunately with the craziness of hosting I didn't take one picture!  Not to mention I didn't get a single picture of Johnny and me all day.  Terrible!

I hope that one day the kids will enjoy reading this blog (I print it every year) and remember the types of things they wanted for Christmas.  I find most of my Christmas's as a kid are a distant memory.  I hope that documenting it for them will help them remember years' past.  In 2004 I started a scrapbook to remember things from my grandmother.  I took pictures of everything she had given me and I sent her paper precut to fit the pages to write a story about each item she had given me.  Then I put her hand written note with the photo in the scrapbook.  I truly cherish having that book and love that my children will know that history.  A few of my favorite things from her include a very old trunk that she thinks came with her family on a boat from Germany to the United States (the lock is dated 1817), a cookie jar she remembers getting for her birthday in 1950, and salt and pepper shakers from a collection her mother had with over 300 sets!  So many things in our world today are expendable so we don't keep things like we used to. But I often look back at my own photo books and blogs and remember things my children love.  I can't believe in just a few short days we will be wrapping up another year!  It really is true that time seems to go faster as I get older...


Monday, December 26, 2016

Trialing Visual Prosthetics, Contacts: Take Two and the Developmental Pediatrician

We visited Dr. Mojallal last week to try the NuEyes Visual Prosthetics/video glasses.  I had a deal with Cole that he was going to put the contacts in and we prepared all week.  Unfortunately when it came down to it he just couldn't.  He says he's afraid his eye ball is going to get poked into his brain and get stuck there.  We took a step back and let him take a "contact class" with the optometrist which entailed trying to teach him how to hold his eye lid and practice touching his eyeball.  Unfortunately nothing worked. 

Although the NuEyes can be ordered with his prescription lenses, it is too hard to test and see if he would benefit from them over his existing glasses.  So to get a good idea whether we should get these glasses we really need him to wear the contacts.  The NuEyes are AMAZING!  I expected it to feel uncomfortable having the image so close, but it wasn't awkward at all.  You literally say, "glasses closer" and they automatically zoom closer to whatever you are viewing.  Similarly you can say "glasses further."

So Dr. Mojallal said to go home and keep working with him on the idea of putting in the contacts.  He asked us to come back once he is able to touch his eye and when Cole says he's ready to wear them.  At that point we will then reinvestigate the glasses.  I did call our insurance company and I am able to get a policy for them.  It's not cheap since these are considered medical equipment and have a higher rate, but still good to know that we wouldn't have to pay full replacement value!  The doctor also said he has some ideas where we may be able to find grants to pay for them (they are over $6,000). So we will keep trying and hope that he will adjust to the idea sooner or later.

We also had an appointment for Cole with the developmental pediatrician last week.  It went very well and he was very focused for the appointment.  She asked him some tough questions and had him complete some tests to determine how he's doing developmentally.  Overall she said he appears to be on track educationally although he does exhibit some delays when it comes to tasks that require more precise visual involvement and focused attention.  Based on the feedback I provided on behavior challenges at school and what he exhibited during the appointment, she provided some recommendations.

The first is that we request the school complete a Functional Behavior Analysis (FBA) to provide the data needed to implement a Behavior Implementation Plan (BIP).  I met with his classroom and resource teachers to talk through the options.  He currently has a goal in his IEP to have 90% of his time being on-task (aka staying focused).  They provided data from the on-task testing they have been doing which shows there has been an increase in the time he is on-task from 67% of the time to 76% since the implementation of the token/reward system.  After a lengthy conversation we have decided to give this strategy a  little more time to see if it continues to improve before we move to the FBA and BIP since they think the BIP is less motivating than a reward system.  With the reward system, after he gets 9 tokens he is able to choose a reward (playing with action figures, play doh or bubbles).  To gain tokens he needs to 1) raise his hand if he has a question, 2) complete his work, 3) keeps his hands to himself.  While I am not against this system, I worry the time between rewards is too long for him to connect it with behavior and therefore it may not actually change it. But I also believe the whole team needs to be bought into whatever solution we choose if we want it to have an impact.

The developmental pediatrician, Dr. Dharia from Capital Area Pediatrics, also suggested I reach out to the Department of the Blind and Visually Impaired and request a classroom observation to see if we can determine the antecedent to misbehavior.  The theory being that if he is unable to see his work that he will lose focus which could lead to misbehavior (e.g., interrupting his neighbor).  After speaking with our Loudoun County contact (who I've been working with for several years), she suggested I coordinate more closely with his teacher of the visually impaired first.  If she wants additionally support from the state then she would love to come help.  After speaking with his TVI, I am going to provide some additional documentation for her to review (e.g., class work) and get her perspective on whether any additional modifications need to be made for him to successfully complete his work (i.e., access his education).  I'm feeling rather discouraged currently. Mostly because I am not always a patient person and when it comes to my child's education, I want to move at lightening speed (we're definitely not).  The good news is that Cole is on track educationally so we have some luxury with time to figure out the learning part.  But I worked diligently last year (or I thought I did) to be prepared for this year and I'm not sure we've truly figured everything out yet.  I try to remind myself that every child's learning is a slow and steady journey and if I try to adjust my perspective perhaps it won't feel so time sensitive and I won't feel so frustrated.  I find myself volleying from feeling like I am too involved and need to just let nature take its course to feeling like I need to find better ways for him to learn and for him be able to see the work he is expected to do.  And it is with that thought that we are off to enjoy the holidays and not think about school or doctors for a week.

As promised, I have to share the latest funny comment from Cole:
At church Sunday we were praying after communion and Cole leans over and whispers, "Mommy, is it ok if I pray for bad people?" I said, "well of course, they need us the most!" He said, "Ok, then I'm going to pray for the devil. That is one bad dude."

Tuesday, December 6, 2016

Trip to OH for Cole's Nystagmus Surgery Follow Up

Given Cole has only been on an airplane once and that was to go to Disney when he was two years old, a trip to Ohio on an airplane was super exciting for Cole.  The fact that we were going to stay at Ronald McDonald House was just frosting on the cake.  The excitement started with the moving sidewalk.  Wow, the trip could have stopped there and he would have talked about it for weeks.

Unfortunately we couldn't get a direct flight and the best flights were out of Reagan National so it was a long day with a connection through New Jersey. Breakfast in Arlington, lunch in Newark New Jersey and dinner in Akron Ohio.  We almost missed our connection so we didn't have time to visit with pilot after the first flight.  So when we arrived in Akron the pilot was super nice to move and let Cole take over the cock pit.  He thought it was Christmas!  Then he got to get off the plane on the tarmac given the airport is super small (the only food after security is an Arby's).

The taxi ride in the Dodge Caravan to the Ronald McDonald House was equally as exciting for Cole and he sat in the "way back" which was novel for him.  Then when we arrived at the house he was repeating ongoing "remember when" stories about the security car that took us back after surgery and throwing up outside the house.  Not my favorite memories, but funny none the less.  We settled into our room and decided to hang out down in the family room of the house.



It was perfect timing to be downstairs because they let Cole feed the fish!  Although we have a fish at home, he thought it was pretty cool that when you held the can by the tank all the fish swam over.  And not only that, he has to get his fingers wet, then touch the fish flakes and then put them back in the tank to get the fish food to float into the water.  It was a fun experience for him since our tank at home is much smaller and has only one fish.





Cole also wanted to give the gift cards he collected for the house.  As you may remember, Cole chose to collect gift cards from his friends instead of toys for his 6th birthday.  He collected $250 dollars in gift cards and the Ronald McDonald House was so excited to receive them! We talked about how important it is for the house to be able to buy soap, laundry detergent and food to stock the kitchen.  We talked about how some families need to stay at the house for a very long time.

As we were playing in the family room a little boy came over to Cole and I told Cole to introduce himself.  He and Westin were immediately best friends.  They played together for a little while and then Cole asked if we could eat with him and his dad.  Cole thought it was pretty cool he got to have a play date over dinner.  And the best part is that Cole never asked why Westin's head was completed shaved.  He didn't ask about that scar he had just like Reagan's from forehead to behind the ear or the large abrasion on his forehead.  And he never asked why he was wearing a cervical collar and wasn't allowed to run or jump.  And that is what I love about kids.  They don't always find the differences in people first - they find the things they love and embrace those. We have so many lessons we could learn from our kids.

It was heartbreaking to hear over dinner about the terrible car accident Westin was in with his mother just 8 weeks before.  He had severe head trauma and was inpatient at Akron Children's for 7 weeks and now at RMH while he receives therapy.  Unfortunately his mother did not survive the accident and dad has gone from working dad to the single care giver as they figure out the lasting affects of the injuries and how to move forward without his wife.  I would love all who read this blog to lift them in prayer as they learn to live their new normal.

After playing for a little while after dinner we retired to our room to try to get a good night sleep before testing on Tuesday.

As usual, Cole was up bright and early Tuesday morning and ready to go down to play with Westin.  We got showered, dressed, cleaned our room, stripped our sheets and packed our bags before heading down to the kitchen before breakfast.  We needed to be at the hospital by 8am so we were the only ones down in the kitchen.  Cole was rather disappointed he didn't get to see Westin in the morning.

We walked over to the hospital and were even a little early.  We checked in for our appointment and were caught off guard that they didn't seem to remember that we had both ophthalmology AND optometry appointments scheduled.  They told us to see Dr. Hertle first so we headed back, they ran through the traditional vision exam and Dr. Hertle said he looked good.  He said we should come back in 3 months for the testing once Cole has adjusted to the contacts (that we would be getting in the next appointment).  Rather caught off guard since he told us to come back in December to repeat the testing, I reminded him that we flew here for the appointment and I thought we were doing testing and that's why he wanted to see us back.  He said the testing will tell us more once he has the contacts but if it's easier we could schedule the appointment for over the summer.  Still rather caught off guard I said ok and the optometrist came in to fit the contacts.  Well apparently they were already ordered and she had them in!  Although we were told he needed to be measured for them and that's why we were there, I was excited we were going to walk out with them today!   As a reminder, we are trying the contacts because the doctor said research shows they may quiet the nystagmus by telling the brain something is new and different. Also, by having the lens connected to the eye the light doesn't have to refract twice and therefore is more effective.

Unfortunately after an hour of coaxing and eventually threats, Cole still refused to put in the contacts.  At this point I'm thinking this trip was a complete waste of time and money and I think they could sense my frustration.  I had them speak with Dr. Hertle and we decided to do the repeat testing today.  Unfortunately the testing was rather difficult for Cole and he really struggled to look exactly where they needed him to.  He repeated the eye movement exam where he had to watch images flashing onto the screen.  Then he had to repeat the test where he indicated which dots had lines and which were solid.  The last test he did required him to look into a small black circle and look at a red line.  Unfortunately he really struggled to look in the small hole and keep his nystagmus calm so the camera could catch the view it needed.  But in the end we got the testing done that we needed.  Dr. Hertle said he would send us the results of the testing that will hopefully outline the improvements we gained with the surgery.  But just watching him do the eye exam he said he is doing better.  That was very encouraging.
We headed back in to see the optometrist and I was hopeful after some time to calm down and talking he would put in the contacts but he wouldn't.  So we ended up leaving on the condition that he will put them in with Dr Mojallal next week when we have the appointment to test the NuEyes.  I'm thinking we may need to bring Johnny to that appointment!  He is much better at being matter-of-fact and not caving to the soft side like I do.

So off to the airport we went to sit there for 4 hours and wait for our flight.  Unfortunately I tried to catch an early flight, but nothing was available.  And not only that, it appears as though our flight is already delayed so we will miss our connection.  Luckily there is really good WiFi and a playground.  Hopefully we'll get in sometime tonight.  Ok, back to the playground....